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Prednisolone diary 16 - review of the year

This is a summary of how steroids have treated me over the past year.

I began 2018 on 4mg pred, but with daily nausea, headache and extreme fatigue. After discovering that I had adrenal insufficiency, my endo suggested increasing to 5mg, but before that experiment had gotten very far, I developed myositis.

After a variety of tests, by June, I was on 25mg methyl pred daily.

With my CK levels dropping sharply, in September I began to taper. I'm now on 8mg daily.

POSITIVES

On the raised steroid dose, my perpetual nausea vanished immediately. After 3 months, my CK levels had dropped to near normal and after 5 months or so, my legs had strengthened and I lost the pins-and-needles sensations. On 8mg I have not yet had the return of day-long nausea or headaches. I seem to have avoided steroid-induced diabetes (so far!)

NEGATIVES:

I experienced no improvement in fatigue or effort tolerance - and remain largely housebound. I have put on over 15kg in weight and have the characteristic "Cushingoid" moon face, hunchback and central fat deposition. My heart continues to cause worry, with a resting heart rate of around 100 bpm. I had several months of vicious heartburn.

STEROID LEARNING: Steroids seem to have helped with the inflammation and muscle damage of myositis. Even a big increase does not help me with fatigue. They are necessary to avoid the generalised nausea and headache that come with adrenal insufficiency. Above 12mg they give me terrible heartburn. Below 12mg, it seems to take at least a month to stabilise on each 0.5mg reduction (sweating and flushing, shaking, nausea etc are typical signs of failing to adjust). Some experimentation with dose scheduling is helpful. eg to avoid morning migraines, I have to take an evening 1mg dose no earlier than 7PM (this is not the advice usually given on steroid dosing). I also take a small dose of hydrocortisone on waking. Many endocrinologists know surprisingly little about steroids.

If you have been, thanks for reading x

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THANKS whisperit for this INVALUABLE personal intel!

๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ€โค๏ธ๐Ÿ€โค๏ธ๐Ÿ€โค๏ธ Coco

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Whisperit โ€” Your story really highlights the double-edge sword of prednisone. It also tells me how disabling myositis is. Is it mainly the myositis that keeps you housebound? I have had muscle pain, mainly in the shoulders, over the years and had my CPK checked because of it, but I have never had true myosotis. Do any other of the disease-modifying drugs help at all? Are you happy with your doctor? Would you consider someone who specializes in myositis? One thing that struck me was how the prednisone decreases your nausea. I have had that experience,too, when I hate cheated and taken prednisone for a mild flare. My doctor hates prednisone unless absolutely necessary like in your case. Thank you for your summary. Just hoping you can get to doing better in the future. Really feeling for you and your struggles. K

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Thanks KayHimm,

The myositis seems to be an added extra to the rest of the auto-immune symptoms. I was already chronically fatigued and limited to walking maybe half a mile on level ground prior to late 2017 when a raised CK level appeared in my bloods. Over the next few months, I noticed progressive limb weakness, but my GP was unconcerned until a repeat CK in March 2018 was well into the thousands (normal upper limit is about 200).

The sneaky thing was how insidious was its onset. It was in a public library when I bent down to reach a book on the lowest shelf and couldn't get up that made me realise something new was going on. At its worst, I was unable to get upstairs, or in or out of the bath (couldn't lift my legs over the sides!), struggled to get up from a chair, and had strange pins and needles sensations in my legs - oh yes, and a painful pelvic floor problem.

I did go onto azathioprine, but reacted badly and had to stop, so treatment has been methyl pred only - and at a much lower dose than normal for myositis as I have had a bad reaction to pred in the past. Finally, though, the myositis seems to have retreated and I can climb the stairs and bath again! My main concern is the severe fatigue that has never gone away since early in my AI diagnosis, so this is where I am looking for new medical insights. x

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The fatigue can be debilitating, I know. It is multifaceted and poorly understood from what I have read. I think I read that they are using ADD medications on MS patients with some success. I am wondering if they have tried it with other autoimmune diseases. A good physical therapist might be able to help with a graded exercise plan. It is a challenge with your myositis, I know. Do your doctors think that is compounding the fatigue? I give you credit for walking that a half mile! So hard with your symptoms. K

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The fatigue is extreme and no medic - rheumy, endo, neuro, cardio or GP - has yet come up with an explanation, far less a treatment. I've done graded exercise with an occupational therapist and physiotherapy and had a sleep study. Nothing seems to help :(

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Oh, that is so discouraging. It looks like some lupus patients are taking Adderall for fatigue. Would you want to mention it to your doctors as a possibility? K

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I'll certainly take a look, KH, thanks x

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Have you ever been on statins? Just wondered...

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No. Biopsy said "polymyositis with unusual features" but no other indications of aetiology x

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Always interesting to read your insightful and informative posts whisperit - a great help to many people here I am sure. I hope you get some respite from the dreaded fatigue soon. PS my colouring-in style is very similar to yours - only with a big thick black marker pen! X

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Thanks, I do hope there's a bit of info that might help someone else in there. A goth colouring book for you then x

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Oh yes! I like the sound of a goth colouring book - all black! I might even find it therapeutic if I try and keep within the lines! Hope you are feeling ok today x

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And it turns out there ARE goth colouring books. I'll leave you to google it! I made the mistake of walking beyond my normal "best distance" of about half a mile on Saturday, and boy am I paying! Yesterday and today I am practically stapled to my armchair, with a raging migraine, heartburn and racing heart. Creeping to the toilet maxes out my energy levels. "Don't get uppity!" seems to be the lesson. Hope your day is going OK x

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Jeez - that doesnโ€™t sound good, I do hope you get some respite soon and that the staples loosen a little. I think you can fill your boots on the uppity front, but that might use up your precious energy. Had a quick google and have found some suitable colouring books! Will fill in a page and post it for your amusement! My daughter is thinking of a career in art therapy - she can practice on her old mum! X

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Brilliant. In my old life I was a play therapist - art therapy is definitely a rewarding career, if not financially x

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Too whacked out to reply properly having missed my afternoon nap today. I donโ€™t think anyone has ever mentioned finding a treatment helpful for fatigue? I see an OT for fatigue management but we both feel Iโ€™m a bit of a lost cause. Love your pic X

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indeed. hope you get extra zzzzzzz tonight x

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Thanks - Iโ€™m off to bed now for an hourโ€™s zzz as committed to going out to watch movie at 9pm, The Favourite, with hubby and a friend. Dental hospital at 9am tomorrow for birthday thrill - itโ€™s all go here. ๐Ÿ˜ด๐Ÿ˜ด๐Ÿ˜ด๐Ÿ˜ด

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Empathy is all I can offer, with no experience of steroids or that level of fatigue. Keep colouring, stay focused and in the spirit of 'no venture, no gain', if you can bear the taste of camomile tea, it really does reduce BP (talking litres, not a cup) xxx

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All ideas gratefully received. Camomile it is! x

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Honey hides the taste! Do not confuse with urine samples (though it was a tradition in Germany to drink one's own pee once a year...that was shortly before a failed architect with no girlfriend and diminutive stature came to power..say no more)! xxx

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Thanks so much Mike for giving us this review . It is totally invaluable to have your experience added to our picture of those devastating autoimmune conditions.

I think we will all relate to your picture, makes us feel better that we are not going mad, merely trying to live with the unliveable!!!

Pred is indeed a double edged sword. Like you I take a very little hydrocortisone at bed time to help me through the night. I usually wake about 3.30 am and take another tiny amount. If I take that I get back to sleep.

I am still on 5mg Pred a day taken in the morning, plus the 12 weekly injection of Methyl Pred from the Rheumy.

My fatigue is bad, but nothing as bad as yours. I so hope you find some new treatment this year that will make a massive difference.

Thanks for all your in put on here! xx

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Like you say, cutty, if not for hearing from everyone else on here, I too would have gone mad a long time since. When you describe the steroid regime you have worked out, I suspect it's only us lot who appreciate what it has cost you to glean that knowledge. "Living with the unliveable" is only too true.x

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Many thanks whisper it for your incitefull prednisolone diary updates!. It's really helpful. Well done for getting down to 8 mg daily and avoiding diabetes!. No mean feat. I'm very sorry that the negatives ie fatigue and possibly heart rate are still making you housebound!. Have you been put on a beta blocker?. I too have a resting heartrate as high as yours with symptoms like palpitations, headache , chest pain. I started on a low dose with Bisoprolol and managed well for a year then the symptoms returned and the dose has been increased and symptoms sorted again. I too find the fatigue very disabling but I'm not as bad as you. I'm on 7.5 mg steroids and can stay on that dose for another 4 months . I may well still be a candidate for adrenal insufficiency as do get some of the symptoms, am noting them for my Consuktant visits!. Do remember to ask about a Dexa scan and bone strengtheners!. Very important!. I do hope 2019 is the year you crack the fatigue problem and improve your quality of life. Take careX

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Them's good points, misty. I should definitely do something about the bone density check. In my pharmacy chest (I could practically open a local branch of Boots with all the meds I have) I do have B blockers - in fact, I took one for the first time in many months this morning. Have you had any problems with them? x

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I know what you mean about being able to stock a local branch of boots Whisperit , having a lot of medication just in case!. The only thing to watch with the beta blocker is it can lower blood pressure so get up from your chair more slowly so you don't go lightheaded suddenly. Other than that I've had no problems. Fingers tightly crossed it helps. I've also managed to go from osteoporotic to osteopenic despite not being able to walk far and being on steroids for over 26 years!. I'm thrilled at this. It's because of the bone strengtheners I've taken so I'm glad you'll ask about it. All the best. Xx

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Thanks for all the detail whisperit. I have never been given pred, on the grounds that itโ€™s apparently strongly contraindicated for anyone with bipolar disorder. Iโ€™ve never been ill enough for it to be the only answer though.

Reading through this and hearing otherโ€™s experiences is very very useful.

The weight gain hardly helps with fatigue although it seems a necessary evil. Necessary evil sums up a lot of the meds methinks.

I canโ€™t colour inside the lines either x

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Hello whisperit,

I've got a thought (particularly after noting your adrenal insufficiency) that might at least give you an avenue to ponder and perhaps discuss with your GP/consultant.

Through my medical travels that began with breast cancer, I've had 2 kinds of horrendous fatigue. The first started after/during chemotherapy. It went on for 2 years and almost every single day I could hardly connect to myself, let alone do things in a way I used to -- fast. I lived in that dissociated foggy place we all know well on this site. Once in a blue moon I'd lift, usually while forcing myself to do things anyway, but rarely and almost never before 6pm. After about the 8th visit to the GP and whining endlessly at every single cancer follow-up, where I was found to have low Vit D, was medicated and still I had the fatigue; and where I was told I was probably in a depression and was medicated with Citalopram for a year and still I had the fatigue..., I finally got a junior in training who said, "Have you had your testosterone levels checked?"

I was seeing a menopause specialist in a few weeks time following up on treatment for my chemo-annihilated female hormones. The oestrogen patches worked like a charm (and almost instantly) for all things female, just not the fatigue. I asked then if she could do a testosterone check. She figured it could be that or adrenals. And voila! My testosterone levels were on the floor. She started me on a gel. It is not approved, so I had to agree to something, which I willingly did and had to accept the fact that I'd get hairy thighs, which I ...did. But I have not looked back since. Well, until fatigue number 2 hit.

So...the second kind is the same in nature-- dissociated pea-soup life-- it is just not so predictable as the first kind. I can be fine and then suddenly not. It can last a whole day or an hour. It can be every day for a week and then I get 4 days of normal. This time I understand from the Rheumatologist it can be the cytokines and cycling inflammation in the body, which makes more sense why it's not so consistent. But it is still sparring for first place with insane sun sensitivity for me as the hardest symptom to handle with UCTD.

Interestingly, I had my yearly test for testosterone levels in October and found they were near the bottom again, even with the treatment (so I've increased it a little since). I always question now, what actually might be causing my fatigue patches. Hell, I wonder what a study would look like with all of us from this site having our testosterone/hormone levels checked regularly.

Sorry for such a long reply, but paraphrasing G.B. Shaw: I didn't have time to write a short one. : )

Panda x

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I really appreciate this - I am convinced there is something systemic that is interfering with my energy metabolism - a chronic shortage of some critical intermediary and/or a feedback mechanism that is disabling the normal mobilisation of energy supplies. But none of my consultants seems to be interested in going beyond the most obvious and superficial possibilities. A single synacthen test, routine monitoring of thyroid hormones and blood glucose, and once those are cleared, their curiosity ends. Consequently, I am dependent on my own researches or suggestions from other patients to come up with more creative possibilities. Testosterone is one I will dive into straight away. So many thanks! x

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I too believed it was something systemic, but also could not get the oncology team or the breast care team, let alone the GPs to go past similar testing you had.

If you do get the go ahead, note that there are 2 tests (SHBG and Free Androgen) and it should be done preferably before 10am. If a male is treated with testosterone, I believe there are greater risks of prostate growth and prostate cancer. But... if you don't have enough to begin with new questions obviously arise.

Oh, good luck, whisperit! I'm always so happy when I have a new thought to potentially give some hope.

Px

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I agree have to find the curious ones. Thanks for all you insight. x

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Is it a specific kind of testosterone test? I am wondering about the online one here medichecks.com/testosterone...

x

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Ha! Messages crossed. Let me take a look and compare it to my test.

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So, looks like understanding the results would be the hardest part if you did a private test. Also making sure you have all the right things tested. Though if a GP or a Rheumy did it, you'd likely have the same problem.

My first letter said to test:

Estradiol/Testosterone/SHBG and Free Androgen index before next time

3 months follow-up, then yearly while on treatment.

In my results letter, she states:

Testosterone 0.1 mol/l (low)

SHBG 143.7 mol/l (top end of normal so free oestrogen and testosterone will be affected)

Free androgen index <0.1 -- below female range

In the few years following, my results have varied greatly. When one part would go up another would come down (but this was mixed up with the female hormones I was also taking making it more complicated). The menopause specialist (who also treats men -- I've seen them coming from her office) was the way to go for me, but since the NHS has done away with ours last year here in the SW, she is private only now. She was about ยฃ100 for half and hour (which was 45 mins). Incredibly helpful and knows all about adrenals and androgen and female hormones and how they all interact. I would highly recommend seeing if there is a consultant out there who could decipher the results properly, but it probably wouldn't hurt to get the full panel of testing done privately if it's an option for you. I had to have it done before I saw her. My surgery did it, but I did have the letter...

This test is more comprehensive. But it doesn't mention the Free androgen index as my consultant has. Not sure if one of the others mentioned might just be that in a shortened form?

medichecks.com/tests/male-h...

Again, good luck! Px

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That sounds exactly my experience. I had been reassured after I had been told that my cortisol level was "normal". But after I got desperate enough to look into it, I realised that this "normal" result was from bloods done in the late afternoon, when the "normal" range started close to zero - so being tested at that time was almost useless. My doctors were not interested when I pointed this out - my rheumy said, "Oh, you can't have adrenal insufficiency after just a year on steroids". So I was forced to pay for a home saliva test. This showed I had zero cortisol at the beginning of the day, when it should be peaking, and it was this result that persuaded my rheumy to refer me for the synacthen test which confirmed insufficiency. I had a similar issue over CK levels - but don't get me started!

Anyway, thanks Panda. Always good to have something to work on x

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!! Yep, perfect example of how we need to be not only our own advocate, but our own detective too. Do let us know what comes of this. I'm most interested.

If I could go back in life, I think I'd take up medical research. And at the moment, my PHD of choice would be on testosterone levels and fatigue. Because once my levels were in the normal range, I seriously bounced. I felt like a machine. I was AMAZING (the best I'd ever felt) for 2 whole years, before the AI came along, that is.

I so hope there's some hope (better still, answers) here for you.

x

ps. your mandala colouring is hilarious!

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This was really helpful, I've had issues with muscle weakness so know all too well how frustrating it is. Since starting myco it has improved a bit and I've managed the stairs without my crutches a few times in the last week. Although I've also been taking 60mg pred over the last week to enable me to breathe! I'm seeing gp this week to discuss a plan for reducing. I'm hoping the myco does its job and allows me to get off the pred as I am fed up of not recognising myself in the mirror as well as worrying about the other more serious effects it may be having that I'm unaware of.

One question, the fat deposit at base of neck - is it normal for it to feel bruised? It's not painful other than when touched. Just wondered if that's normal?

Cath x

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yes, my respirologist has said that any lung issues would be treated with bigger doses of steroids too. My shoulder/neck hump doesnt seem tender, but easy bruising and skin fragility are typical in Cushings, so maybe that is a factor for you? Hope you continue to make progress x

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Glad you have dropped your prednisone use. I have lupus and when I first started prednisone it helped a little but not much. I was diagnosed back in 2010, I could take 40 to 60 mg a day and it would help a little. Now 20mg fixes everything. I have tried to taper off but hurts too much. The body seems to have an adjustment phase and eventually settles on an amount that works. Is great if you can keep it on 8mg. Keep us posted.

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Hi mickey, May I ask how long you have been on 20 mg for ? I am struggling to get below this amount. Many thanks Lou x

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Thanks for posting this whisperit!

I'm on steroids..pred n ointments and although they do help for a while when I reduce things go awry again so I find this info very informative.

I love your colouring in...well done! ๐Ÿ–๏ธXx

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Thanks Miss. I'm hoping to get a gold star one day x

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โญgood boy!! Keep trying xx

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